Book Review: The Parent’s Guide to Down Syndrome

Hey, before I start: I got an early copy of this book to review, ‘kay? Okay.

I think that most parents who have a child with Down syndrome remember cracking that first informational book or pamphlet. I also think that the parents who recall that moment with any fondness are in a minority.

When I started really believing that LP had Down syndrome (but before we got any test results back), I went to the library and borrowed every book I could find with the words “Down syndrome” in the description. I’ll confess to you: I flipped through those books and never finished a single one.

I was like the Goldilocks of T21 books. Too sad. Too technical. Too saccharine sweet. This one freaks me out. This one is just offensive. Nothing was quite right, and I gave up.

I still wonder what would have happened to me if I’d never found those connections, and had stopped at that terrifically unsatisfying pile of books. Would I have had a harder time bonding with my baby? Would I have the support network that I have today? What would my overall view of disability been?

And the fact is, all across the country, parents are being passed those not-quite-right resources every day. Genetic counselors, pediatricians, OBGYNs, even well-meaning family members are purchasing and distributing books on Down syndrome. Yet, I have never read a comprehensive book that was actually written for parents, by parents, that I liked, until The Parent’s Guide to Down Syndrome. It covers the medical nitty gritty without being overwhelming and holds your hand through the emotional parts, as well as covers a wide age range. This book could very well be the only book that a parent could purchase; it is full of resources and can be treated as an index to keep returning to as your child grows.

It makes very little sense, actually. What is a doctor going to be able to tell you when you are in that raw, tender moment that could possibly equal the words from someone who has gone through the same moment with their own child? Of course there are good doctors, don’t get me wrong, but what makes the strongest, truest connection is usually someone who has had the same lived experience as you. And yet often I found that the parent books were hard to relate to because they held views that didn’t speak to me.

Much of the book reads like a coffee date with a hundred or so other parents (another disclosure, I’m one of those parents). In there, you’re going to find a voice that resonates. And I found myself recognizing parts of my own metamorphosis; I saw my initial holy-wow-can-this-be-true self, that changed to the my-kid-is-the-best-ever-forever-and-ever self, that changed to the oh-crap-I-guess-I-should-plan-a-little self, and on and on. I imagine that someone could read through all of the accounts and truly see the overarching path that many parents take, and notice that we mostly end at the same place—love and acceptance—without falling into the single experience of just one person.

Between the real experiences, you’ll find a ton of resources that span infancy through adulthood. That’s where the professionals come in, and hey, they might be our frienemies but we like to hear what they have to say every now and then, right? The topics and chapters are laid out very well, so a reader can go in and get information on specifics if they wish. I certainly wasn’t very interested in trust planning when my baby was four months old, for example.

Most importantly, the book does not sacrifice values at the altar of neutrality. Sometimes I think in an effort to be neutral, our parent community has an “everything is equal and valid” kind of presentation, and that can be dangerous. Instead of doing that, this book takes pains at crucial points to steer the tone and meaning away from possible stigmatizing language and ideas. The book recognizes that we are all human with the same basic needs and desires while also acknowledging that people with Down syndrome may have certain needs due to their particular disability.

It isn’t going to give you step-by-step instructions on your kid. It won’t tell you what to do, because the authors know that there is no singular path for any child, let alone a child with Down syndrome. But it will give you a decent atlas, if you will. Like, What To Expect When You’re Expecting sort of book geared towards topics specific to Down syndrome.

And now I come to my favorite part: the voices of people with Down syndrome! I was so pleased that the later chapters that cover adult topics actually had… Yes! Adults with Down syndrome sharing their lives!

I can’t overstate this: I will never know what it is like to have Down syndrome. At some point in my son’s life, he’s going to have to find his second family, among other people with intellectual disabilities. This book starts that conversation for new parents so they can read the words of other adults and have a glimpse into their children’s (wonderful) futures.

Image: The Parent’s Guide to Down Syndrome book cover. Blue fading to yellow/orange with blurry sparkles in the background.

If you’re a parent in the community, I’d highly recommend buying a copy of this book at sending it to your OBGYN or pediatrician, as well as your local Down syndrome organization. Or, better yet, hop on over hereand enter in a really fun giveaway. The prize includes an “I love someone with Down syndrome” tote, fun stickers, a registration to this year’s 321eConference, other book resources, and of course, a copy of The Parent’s Guide to Down Syndrome.

You can read more about the book here, including where to purchase and book tour details.